Class of 2009 - Sisters in the same time frame
Comments
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Giovanna -- try searching the word "tamoxifen" (note the different spelling than what you are using) in the search function on this site... I think you will find lots of threads on the subject. I'm pretty sure I've seen "A bottle of Tamoxifen" in the active threads quite regularly.
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For those of you who were envying me living near the beach.... In the interest of full disclosure: Temperature today 95F, heat index 109!!!!! Very humid, not much breeze. UGH!
pam
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well I don't envy you one bit. Live in the city in the south... temp at 12pm 97 and heat index of 104. The house last night was 80 and the air ran all day. It didn't cool off until about 4am. I am thinking serious of buying a window unit. I don't do heat well at all since BC.
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Kittydog,
Buy an AC!!! They even have portable ones that you can roll from room to room... just have to be able to duct condensation tube to the outside (or a drain?). I saw them at Home Depot. I am planning to limit my errands to mornings only! So hot :-(
pam
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Good afternoon ladies-
Mary- after reading your response to my post, I remembered I had a baseline sonogram done on my uterus also before taking Tamox, and voila, 3 months later I am giong in for a hysteroscopy d & c. Things that make you go HMMMM! I knew it was the tamox that caused it, Just have to keep on top of the cramping and bleeding, my gyn told me I would most likely have another d & c in 6 months. She offered ablation, but said that if I started bleeding after that, that I would have to have a hysterectomy. I am done with the parts, so I really don't care, it is my DH that is freaked out by it. But anyway, stay on top of it, and don't let the pain get too bad. Hope all goes well for you
Welcome to our little group Giovanna. I hope you find the comfort and support you need here. I think we can all understand your anxiety about taking tamoxifen, but unfortunately, it is the lesser of the 2 evils we have to deal with. Take care and welcome
Pam- Hot humid weather is never nice! It has been so humid here lately and raining like crazy! Our air has been running constantly. Love summer, but hate humid summer rainy days!
Hello to all of the rest of you lovely ladies! Hope you all are having a beautiful day!
Hugs
Jen
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So... the ONE good thing to come out of my last year has been my fingernails. They are normally soft and peel or break easily. Post BC they have been so hard and strong. I have been a real fingernail vixon. Until this week. The magic suddenly wore off and my nails are back to the real me. Now if the rest of my body will just revert to the real me :-)
pam
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My nails are the opposite. they have been soft and peel easily...so i have to keep them super short.
Welcome Giovanna....
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Pam-same thing happened to my nails-Gad @ Christmas I looked like one of those Asian dudes who grew out the nails till the twirled everywhere (not really, but they looked awesome & I bought all these great polishes.) Now I'm lucky to have them stay even and even a tad long. Weird!
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My chemo nails have just about completely grown off. They are finally beginning to look good again and I can polish them. They are not as good as before, but I think they will be. I had them done for 10 years and then got tired of spending all the time that it took to keep them. So about 3 years ago, I let them grow and got rid of the fakes. I am taking Actonel and that is suppose to be good for nail growth and strength. I have been on it for over three months, so I think when all the chemo nails are gone, they will really be nice. At least that is my hope.
I went to my regular doc today to find out about my nerve conduction test. I checked in and paid my money, then the clerk and I say that loosely, forgot to notify the doctor that I was there. So I waited over an hour and by the time I got back there, he was gone. Anyway, the PA talked to me. I have neuropathy, not from chemo or carpal tunnel, maybe an unknown. They have put me on some meds for two weeks, then will see what happens. They may have to send me to someone else if the pain doesn't go away and have more tests done. I just do not want to have any surgery. I guess once you get this, it takes a long time for it to heal, if it ever heals. Boy if it isn't one thing it is another.
Hope everyone is doing well this week.
Juannelle
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Juanelle -- how can it NOT be from Chemo (with all due respect)? Neuropathy is an SE of Chemo.
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Welcome Giovanna! I take Tamoxifen... I've been on it since Feb. 2010. I started out with some side effects now not so many. The worse thing I have is a low platelet count which causes me to bruise easily and it's not terribly low, but it is below normal and my knees both "creak". The doctor calls it crepitus and it started 2 weeks after I started on Tamoxifen. For a short while I had really bad leg pain and it went away as mysteriously as it came I hope it never returns! It would keep me awake some nights.
Juanelle I'm sorry to hear about your Neuropathy. There are so many things that could cause it. I really don't see how your doctors could absolutely rule out that it was caused by chemo. But you know they don't like to blame anything on treatments they like for it to be caused by another diagnosis... like, rheumatoid arthritis, diabetes,spinal injuries, etc. Anyway that's just my take on it as a "nurse". Hope you feel better.
Renee
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Wow! Sounds like we need a group hug! No more snakes, shoulder pain, sick loved ones, and for goodness sakes NO MORE CANCER. Hang tough ladies.
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I agree! Even though we read of KNOWN SEs of our treatments, when we report them to our doctors it is never because of the treatment. How can that be? After all, many of us go into this fight knowing the risks. We would just like validation. Sometimes I feel like my doctors think I am an idiot. :-(
pam
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Pam- I get the same feeling from my doctors sometimes. And actuall right now, I have extreme tenderness and pain in my left breast, where my cancer was. I have been complaining about it for a couple weeks now, and my husband is getting really annoyed with me and demands that I go see the doctor. But the last time I did, he told me it was nothing, that it was still tenderness and swelling from surgery and radiation. Could I still be swollen and tender from treatment that ended in November? But, the thing is, it comes and goes, it is not constant. It is so hard to explain. I feel like if I go to him, I have really nothing to show him or any symptoms to tell him about other than my discomfort. So, I figured I would wait until my next mammo, which is July 7th, and then see what happens. Any advice, should I go in sooner? I am also annoyed that my doctor refuses to think that radiation had anything to do with my getting LE. I think it played a part in it, of course getting the nodes removed was the main cause, but I think rads contributed. He says absolutely not, but then cannot give me a good answer as to why I got it. not that it matters, I have it and it's never going away. UUUGGHHH!!!
Sorry ladies, I got on a bit of a tangent there. Thanks for listening! Hope your all doing well today!
Hugs
Jen
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Jen -- sounds like you had a lumpectomy? Either way, lump or MX, what you are feeling is most likely pain from nerve regeneration. I doubt it's cancer returning, since that does not usually hurt (or feel tender). I had no pain from my cancer, which was miscroscopic anyway. Since your next mammo is July 7, that is pretty soon anyway and should put your mind at ease.
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Lilah- Yes I did have a lumpectomy, I actually had 2 surgeries within a week and a half because the margins weren't clear. I never had such an invasive procedure before, so I guess I didn't realize how long it takes to really heal from it. And then to throw radiation on top of that, I guess it is just still pain from all that trauma to my breast tissue. I was telling my DH that my mammo was in a few weeks, he just hates hearing that I hurt, knowing he can't fix it. I think he is more scared of a re-occurrance than I am to be honest.
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Jen could you have fluid there? I saw my rad onc last week and he told me that I had a slight build up of fluid from the radiation treatment and that it was being smooshed by my prosthetic out to the sides. It doesn't "hurt" but it is tender.
He suggested that I take a break from wearing it and go braless as much as possible.
I'm trying to do that as much as possible in the evenings but I just got back to wearing it again after radiation and I don't want to go out in public lopsided now that the weather is nicer and I can't hide my lack of boob under layers.
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MarieK- I don't know if it could be fluid. My rad onc never said that as an option before when I had the same pain. He just said swelling, I thought he was just referring to the tissue. I have never heard of fluid build up from radiation before. I will look that up and do some research. Thanks
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Jburke1 - Yes you could be right - he might have said swelling - I can't remember his exact word now.
To me it just feels like tender jiggly bits!
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Jen, my onc said that if a pain comes and goes it most likely is not cancer...cancer pain does not go away. If it lasts more than 2-3 weeks get it checked. Your mammo is not that far away, so I would just wait and see.
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Jen - could the pain be caused by skin/muscle/breast tissue healing and contracting after radiation? I've noticed the radiation side getting tight and stiff. There is still a hard place where the lumpectomy was. It's just tough to tell what might be going on. I'd bet that your upcoming mammogram will provide some good information. Hang in there.
Thanks for the advice and info on the uterine fibroid, ladies. Glad you are all here.
My 6-month MRI with contrast and mammogram is scheduled for Tuesday. Planning to stay busy until then.
Much Love, Mary
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Best wishes for a good report Tuesday, Mary.
pam
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Thanks, Pam. Saw your post and sad "love you Pam" out loud when I read it. Thought I'd type it, too. XO
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Love you right back! And a big but gentle hug :-)
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Mary- Good luck on your MRI-Sending good vibes and big hugs your way!
Hope you all are having a good day! Thank you to everyone for the advice on my latest issue. I will just hang out and wait and see until my mammo. I couldn't get thru this stuff without you ladies! Your all so wonderful.
Hugs
Jen
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Life after breast cancer is just one cliffhanger after another :-) Certainly adds some interest to my otherwise quiet life. I think I liked it better the old way.
Wishing everyone GREAT reports.
pam
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Lilah, she tried to explain it and I am not sure that I can remember everything, but she said usually neuropathy from chemo is not localized to one area, such as my arm. It is more in the feet and hands. I did have chemo neuropathy in my hands and feet and it is just about gone. Right now they are guessing at what is causing it and have no real answers. Sometimes, they can 't ever figure it out, but I wil take the meds for two weeks and see if it helps. I am on Gabapentin and it is only for the pain, not a pain med but it helps. On the information sheet that I got with the meds, it says they don't know why it works it just does.
Renee, I will probably be referred to a neurologist and have an MRI to see if I have something in my neck or shoulder. More doctors, then a few more doctors, does it ever end?
Paulding, I agree, NO MORE CANCER. Wouldn't life be wonderful, if no had to deal with any type of cancer?
Jen, we can not ever get an absolute answer from our Doctors. They really are guessing on everything. You would think that after all the money that has been spent, that we would be further ahead with a cure. Sorry you have LE and that you will have to deal with it the rest of your life. That just sucks.
Juannelle
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Hi Ladies and Gents
I was diagnozed almost a year ago and so it looks like this thread will be helpful to "compare notes". Im due to have a second mast on the 29thJune, after an MRI and US didnt show anything, but me, my Doc, a Surgeon and US Doc all agreed we could feel "something".
Just looked back a couple of pages into this thread and saw your post one-L about neuropathy. Did you have any signs of it B4 chemo? You say your hands and feet neuropathy has just about gone. THATS GREAT! I really hope what ever neuropathy you have will be a temporary thing because trust me, Peripheral Neuropathy is one of the biggest scumbags of an ailment one could stack up against. I have it in my feet. Theres no cure. My feet burn, ache, tingle, go numb, and go cold at the drop of a hat. I was on Amitriptiline (spelling???) I think in the US its called Elavil. It really helped with the burning but it made me retain fluid and after 5 or so years on it, I stopped taking it. I have to organize my whole life around this horrible thing including when I walk, and how far I walk, and what I wear on my feet..ARG!
Musical
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Juanelle -- thanks for that explanation and I'm sorry you have to deal with this. Here's hoping the new meds work.
Musical -- welcome
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Hi Lilah, thanks : ).
Just see your diagnosis date. Looks like you have some similarities in your dx to me....and THAT was the exact date I felt my 1st lump. I was soooo devastated as Id tried to be really proactive coz Id lost my dear dear sister about 4 years prior to BC. I saw all the nightmare of everything she went through. I and my mum were her caregivers. Anyway after going through all the horror of the waaaaaiting and then being ELATED that it only turned out to be a cyst, I shortly afterwards (a couple of weeks) found another lump and this time it wasnt so kind. Talk about a rollercoaster!
Musical
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